Improving end-of-life care for people with dementia - the benefits of combining UK approaches to palliative care and dementia care

Care-Giving in Dementia: Research and Applications Volume 4

Volumn , Issue , 2004, Pages 365-392

  Small, Neil ^a   Downs, Murna ^a   Froggatt, Katherine ^b  

^a UNIVERSITY OF BRADFORD   (United Kingdom)

^b UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 85084571243     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.4324/9780203494813-24     Document Type: Chapter

References (128)

1. Adams, T.L. and Clarke, C.L. (1999) Dementia Care: Developing Partnerships in Practice. London: Ballière Tindall Royal College of Nursing.
2. Addington-Hall, J. and Higginson, I. (2001) Palliative Care for Non-Cancer Patients. Oxford: Oxford University Press.
3. Ahmedzai, S.H. and Walsh, T.D. (2000) Palliative medicine and modern cancer care. Seminars in Oncology, 27: 1-6.
4. Aries, P. (1974) Western Attitudes Toward Death: From the Middle Ages to the Present. Baltimore: Johns Hopkins University.
5. Ballard, C., Fossey, J., Chithramohan, R., Howard, R., Burns, A., Thompson, P., Tadros, G. and Fairbairn, A. (2001a) Quality of care in private sector and NHS facilities for people with dementia: cross sectional survey. British Medical Journal, 323: 426-427.
6. Ballard, C., O’Brien, J., James, J., et al (2001b) Quality of life for people with dementia living in residential and nursing home care. International Journal of Psychogeriatrics, 13: 93-106.
7. Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C. and Bond, J. (2004) Disclosing a diagnosis: a systematic review. International Journal of Geriatric Psychiatry, 19: 151-169.
8. Bauman, Z. (1993) Postmodern Ethics. Oxford: Blackwell.
9. Beard, R.L. (2004) Advocating voice: organizational, historical and social milieux of the Alzheimer’s disease movement. Sociology of Health and Illness, 26: 797-819.
10. Berger, P.L. and Luckman, T. (1967) The Social Construction of Reality. Harmondsworth: Penguin.
11. Biswas, B. (1993) The medicalization of dying. In D. Clark (Ed.), The Future for Palliative Care. Buckingham: Open University Press, pp. 132-139.
12. Black, D. and Jolley, D. (1990) Slow euthanasia? The deaths of psychogeriatric patients. British Medical Journal, 300: 1321-1323.
13. Brooker, D. (2004) What is person-centred care for people with dementia? Reviews in Clinical Gerontology, 13: 212-222.
14. Brooker, D. (2006) Dementia care mapping: a review of the research literature. Gerontologist, 45: 11-18.
15. Buber, M. (1970) I and Thou (first published in German in 1923). Edinburgh: Clark.
16. Burns, A., Jacoby, R., Luthert, P. and Levy, R. (1990) Cause of death in Alzheimer’s disease. Age and Ageing, 19: 341-344.
17. Clark, D. (1998) Originating a movement - Cicely Saunders and the development of St Christopher’s Hospice 1957-1967. Mortality, 3: 43-63.
18. Clark, D. (2000) Common threads? Palliative care service developments in seven European countries. Palliative Medicine, 14: 479-490.
19. Clark, D., Small, N., Wright, M., Winslow, M. and Hughes, N. (2005) A Bit of Heaven for the Few? Lancaster: Observatory Press.
20. Cohen-Mansfield, J. (2000) Approaches to the management of disruptive behaviours. In M. Powell, M.P. Lawton and R.L. Rubinstein (Eds), Interventions in Dementia Care: Toward Improving Quality of Life. London: Springer Publications.
21. Cohen-Mansfield, J. (2003) Nonpharmacologic interventions for psychotic symptoms in dementia. Journal of Geriatric Psychiatry and Neurology, 16: 219-224.
22. Corr, C. (1993) Death in modern society. In D. Doyle, G. Hanks and N. Macdonald (Eds), The Oxford Textbook of Palliative Medicine. Oxford: Oxford Medical Publications, pp. 28-36.
23. Corr, C. and Corr, D. (1983) Hospice Care: Principles and Practice. London: Faber and Faber.
24. Corr, C.A., Corr, K.M. and Ramsey, S.M. (2004) Alzheimer’s disease and the challenge for hospice. In K. Doka (Ed.), Living with Grief. Alzheimer’s Disease. Washington, DC: Hospice Foundation of America, pp. 227-243.
25. Cotrell, V. and Schulz, R. (1993) The perspective of the patient with Alzheimer’s disease: a neglected dimension of dementia research. Gerontologist, 33: 205-211.
26. Diamond, M. (1988) Enriching Heredity: the Impact of the Environment on the Brain. New York: Free Press.
27. Doka, K. J. (1989) Disenfranchised Grief: Recognizing Hidden Sorrow. Lexington, MA: Lexington Books.
28. Doka, K.J. (2004) Grief and dementia. In K. Doka (Ed.), Living with Grief: Alzheimer’s Disease. Washington, DC: Hospice Foundation of America, pp. 131-144.
29. Doka, K.J. and Aber, R. (2002) Psychological loss and grief. In K. Doka (Ed.), Disenfranchised Grief: New Directions, Challenges and Strategies for Practice. Champaign, IL: Research Press.
30. Downs, M. (1997) The emergence of the person in dementia research. Ageing and Society, 17: 597-607.
31. Downs, M. (1999) How to tell? Disclosing a diagnosis of dementia. Generations (Journal of the American Society on Ageing), 23: 30-34.
32. Downs, M., Small, N. and Froggatt, K. (in press) Person-centred care for people with severe dementia. In A. Burns and B. Winblad (Eds), Severe Dementia. London: Arnold Press.
33. Dröes, R.M. (1997) Psychosocial treatments for demented patients. In B.M.L. Miesen and G.M.M. Jones (Eds), Care-giving in Dementia, vol. 2. London: Routledge, pp. 127-148.
34. Feil, N. (1982) Validation: The Feil Method (1st edn). Cleveland: Feil Productions.
35. Feldt, K.S., Ryden, M.B. and Miles, S. (1998) Treatment of pain in cognitively impaired compared with cognitively intact older patients with hip fracture. Journal of the American Geriatrics Society, 46: 1079-1085.
36. Folsom, J.C. (1983) Reality orientation. In B. Reisberg (Ed.), Alzheimer’s Disease. New York: Free Press.
37. Foucault, M. (1967) Madness and Civilization. London: Tavistock.
38. Glaser, B. and Strauss, A. (1965) Awareness of Dying. Chicago: Aldine.
39. Gorer, G. (1955) The pornography of death. Encounter, 5: 49-52.
40. Hanrahan, P. and Luchins, D.J. (1995) Access to hospice programmes in end-stage dementia: a national survey of hospice programmes. Journal of the American Geriatrics Society, 43: 56-59.
41. Hermans, D., Lisaerde, J. and Triau, E. (1989) Sense and non-sense of a technological health care model in terminally ill demented patients. The first international conference on the palliative care of the elderly. Journal of Palliative Care, 5: 39-42.
42. Hertogh, C. (2004a) Between autonomy and security: ethical questions in the care of elderly persons with dementia in nursing homes. In G.M.M. Jones and B.M.L. Miesen (Eds), Care-giving in Dementia, vol. 3. Hove: Brunner-Routledge, pp. 375-390.
43. Hertogh, C. (2004b) Autonomy, competence and advanced directives: the physician proposes, the patient disposes? In G.M.M. Jones and B.M.L. Miesen (Eds), Care-giving in Dementia, vol. 3. Hove: Brunner-Routledge, pp. 391-403.
44. Hughes, J.C., Hedley, K. and Harris, D. (2004) The practice and philosophy of palliative care in dementia. Nursing and Residential Care, 6: 27-30.
45. Ignatieff, M. (1984) The Needs of Strangers. London: Chatto and Windus.
46. James, N. and Field, D. (1992) The routinization of hospice: charisma and bureaucratization. Social Science and Medicine, 12: 1363-1375.
47. Jaworska, A. (1999) Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Affairs, 28: 105-138.
48. Jennings, B. (2004) Alzheimer’s disease and the quality of life. In K. Doka (Ed.), Living with Grief. Alzheimer’s Disease. Washington DC: Hospice Foundation of America, pp. 247-258.
49. Jolley, D. and Baxter, D. (1997) Life expectation in organic brain disease. Advances in Psychiatric Treatment, 3: 211-218.
50. Jones, G.M.M. and Miesen, B.M.L. (1992) Care-giving in Dementia, vol. 1. London: Routledge.
51. Kalish, R.A. (1966) A continuum of subjectively perceived death. Gerontologist, 6: 73-76.
52. Katz, J., Sidell, M. and Komaromy, C. (2000) Death in homes: bereavement needs of residents, relatives and staff. International Journal of Palliative Nursing, 6: 274-279.
53. Kihlgren, M., Hallgren, A., Norberg, A. and Karlsson, I. (1994) Integrity promoting care of demented patients: patterns of interaction during morning care. International Journal of Ageing and Human Development, 39: 303-319.
54. Kitwood, T. (1990) The dialectics of dementia: with particular reference to Alzhiemer’s disease. Ageing and Society, 10: 177-196.
55. Kitwood, T. (1997a) The concept of personhood and its relevance to a new culture of dementia care. In B.M.L. Miesen and G.M.M. Jones (Eds), Care-giving in Dementia, vol. 2. London: Routledge, pp. 3-13.
56. Kitwood, T. (1997b) Dementia Reconsidered: The Person comes First. Buckingham: Open University Press.
57. Kitwood, T. (1997c) The experience of dementia. Ageing and Mental Health, 1: 13-22.
58. Kitwood, T. and Bredin, K. (1992) Towards a theory of dementia care: personhood and well-being. Ageing and Society, 12: 269-287.
59. Klass, D., Silverman, P.R. and Nickman, S.L. (1996) Continuing Bonds, New Understandings of Grief. Washington, DC: Taylor & Francis.
60. Kübler-Ross, E. (1969) On Death and Dying. London: Tavistock.
61. Lacan, J. (1977) Ecrits: a Selection. London: Tavistock.
62. Lawton, M.P. (1995) Quality of life in Alzheimer’s disease. Alzheimer’s Disease and Associated Disorders, 8(Suppl. 3):138-150.
63. Lawton, M.P., van Haitsma, K., Perkinson, M. and Ruckdeschel, K. (1999) Observed affect and quality of life in dementia: further affirmations and problems. Journal of Mental Health and Ageing, 5: 69-81.
64. Lefebvre-Chapiro, S. and the DOLOPLUS Group (2001) The DOLOPLUS 2 Scale - evaluating pain in the elderly. European Journal of Palliative Care, 8: 191-193.
65. Lloyd-Williams, M. (1996) An audit of palliative care in dementia. European Journal of Cancer Care, 5: 53-55.
66. Logsdon, R.G. and Albert, S.M. (1999) Assessing quality of life in Alzheimer’s disease: conceptual and methodological issues. Journal of Mental Health and Aging, 5: 3-6.
67. Luchins, D.J. and Hanrahan, P. (1993) What is appropriate health care for end stage dementia? Journal of the American Geriatrics Society, 41: 25-30.
68. Lyman, K.A. (1989) Bringing the social back in: a critique of the biomedicalization of dementia. Gerontologist, 29: 597-605.
69. Lynn, J. and Adamson, D.M. (2003) Living Well at the End of Life. Santa Monica: Rand Health.
70. Lyotard, F. (1984) The Postmodern Condition. Manchester: University of Manchester Press.
71. Maguire, C.P., Kirby, M., Coen, R., Coakley, D., Lawlor. B.A. and O’Neill, D. (1986) Family members attitudes towards telling the patient with Alzheimer’s disease their diagnosis. British Medical Journal, 313: 529-530.
72. Marie Curie Memorial Foundation (1952) Report on a National Survey Concerning Patients Nursed at Home. London: Marie Curie Memorial Foundation.
73. McCarthy, M., Addington-Hall, J.M. and Altman, D. (1997) The experience of dying with dementia. A retrospective study. International Journal of Geriatric Psychiatry, 12: 404-409.
74. McNamara, B., Waddell, C. and Colvin, M. (1994) The institutionalisation of the good death. Social Science and Medicine, 39: 1501-1508.
75. Mellor, P.A. and Shilling, C. (1993) Modernity, self-identity and the sequestration of death. Sociology, 27: 411-431.
76. Miesen, B.M.L. (1992) Attachment theory and dementia. In G.M.M. Jones and B.M.L. Miesen (Eds), Care-giving in Dementia, vol. 1. London: Routledge, pp. 38-56.
77. Miesen, B.M.L. (1997) Awareness in dementia patients and family grieving: a practical perspective. In B.M.L. Miesen and G.M.M. Jones (Eds), Care-giving in Dementia, vol. 2. London: Routledge, pp. 67-79.
78. Miesen, B.M.L. (1999) Dementia in Close-up. London: Routledge.
79. Mitchell, S.L., Kiely, D.K. and Hamel, M.B. (2004) Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164: 321-326.
80. Morton, I. (1999) Person-centred Approaches to Dementia Care. Bicester: Winslow.
81. Moss, M. (2001) End of life in nursing homes. In M. P. Lawton (Ed.), Annual Review of Gerontology and Geriatrics: End of Life: Scientific and Social Issues. New York: Springer Publishing, pp. 224-258.
82. Moss, M. S., Moss, S. Z., Rubinstein, R. L. and Black, H. K. (2003) The metaphor of ‘family’ in staff communication about dying and death. Journal of Gerontology: Social Sciences, 58B: S290-S296.
83. Mulkay, M. and Ernst, J. (1991) The changing profile of social death. Archives of European Sociology, XXXII: 172-196.
84. National Council for Hospices and Specialist Palliative Care Services (1995) Occasional Paper 8. Specialist Palliative Care: a Statement of Definitions. London: NCHSPC.
85. National Council for Hospices and Specialist Palliative Care Services and Scottish Partnership Agency (2000) Positive Partnerships. Occasional Paper 17. London: NCHSPC.
86. National Hospice and Palliative Care Organization (2003) NHPCO Facts and Figures. Alexandria, VA: NHPCO.
87. Nolan, M.R., Davies, S. and Grant, G. (2001) Working with Older People and their Families: Key Issues in Policy and Practice. Buckingham: Open University Press.
88. Nolan, M.R., Davies, S., Brown, J., Keady, J. and Nolan, M. (2004) Beyond ‘person-centred’ care: a new vision for gerontological nursing. International Journal of Older People Nursing, 13: 45-53.
89. Norberg, A., Melin, E. and Asplund, K. (2003) Reactions to music, touch and object presentation in the final stage of dementia: an exploratory study. International Journal of Nursing Studies, 40: 473-479.
90. Normann, H.K., Norberg, A. and Asplund, K. (2002) Confirmation and lucidity during conversations with a woman with severe dementia. Journal of Advanced Nursing, 39: 370-376.
91. Office of Population Census and Surveys (OPCS) (1985) Mortality Statistics, 1841-1980, Series DH1 No. 15. London: HMSO.
92. Orchard, H. (2002) Spiritual care in care homes: perceptions and practice. In J. Hockley and D. Clark (Eds), Palliative Care for Older People in Care Homes. Buckingham: Open University Press, pp. 66-85.
93. Patterson, J.T. (1987) The Dread Disease. Cambridge, MA: Harvard University Press.
94. Pitt, B. (1997) You’ve got Alzheimer’s disease’: telling the patient. Current Opinion in Psychiatry, 10: 307-308.
95. Post, S.G. (1995) The Moral Challenge of Alzheimer Disease. Baltimore: Johns Hopkins University Press.
96. Post, S. (2000) The Moral Challenge of Alzheimer’s Disease: Ethical Issues from Diagnosis to Dying. London: John Hopkins.
97. Rader, J., Doan, J. and Schwab, M. (1985) How to decrease wandering, a form of agenda behavior. Geriatric Nursing, 6: 196-199.
98. Rando, T.A. (1986) Loss and Anticipatory Grief. Lexington, MA: Lexington Books.
99. Rando, T.A. (2000) Clinical Dimensions of Anticipatory Mourning: Theory and Practice in Working with the Dying, their Loved Ones and Caregivers. Champaign, IL: Research Press.
100. Russell, C.K. (1996) Passion and heretics: meaning in life and quality of life of persons with dementia. Journal of the American Geriatrics Society, 44: 1400-1402.
101. Sabat, S. and Harré, R. (1992) The construction and deconstruction of self in Alzheimer’s disease. Ageing and Society, 12: 443-461.
102. Saunders, Dame C. (1998) In Information Exchange, 25 June. London: National Council for Hospice and Specialist Palliative Care Services, pp. 6-7.
103. Saunders, Dame C. (2003) Watch with Me. Sheffield: Mortal Press.
104. Schulz, R., Mendelsohn, A.B., Haley, W.E., et al (2003) End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349: 1936-1942.
105. Seale, C. F. (1991) Death from cancer and from other causes: the relevance of the hospice approach. Palliative Medicine, 5: 12-19.
106. Seale, C. (1995) Heroic death. Sociology, 29: 597-613.
107. Seymour, J., Clark, D. and Winslow, M. (2005) Pain and palliative care: the emergence of new specialities. Journal of Pain and Symptom Management, 29: 2-13.
108. Shucter, S.R. and Zisook, S. (1993) The course of normal grief. In M.S. Stroebe, W. Stroebe and R.O. Hansson (Eds), Handbook of Bereavement. Cambridge: Cambridge University Press, pp. 23-43.
109. Small, N. (2000) The modern hospice movement. In J. Bornat, R. Perks, P. Thompson and J. Walmsley (Eds), Oral History, Health and Welfare. London: Routledge, pp. 288-308.
110. Small, N. (2001) Theories of grief: a critical review. In J. Hockey, J. Katz and N. Small (Eds), Grief, Mourning and Death Ritual. Buckingham: Open University Press, pp. 19-48.
111. Sontag, S. (1977) Illness as Metaphor. Harmondsworth: Penguin.
112. Stokes, G. (1986) Wandering. Bicester: Winslow Press.
113. Stokes, G. (1987) Aggression: Common Problems with the Elderly Confused. Bicester: Winslow Press.
114. Stokes, G. (2000) Challenging Behaviour in Dementia: a Person-centred Approach. Bicester: Speechmark Publishing.
115. Tillich, P. (1959) The eternal now. In H. Feifel (Ed.), The Meaning of Death. New York: McGraw Hill.
116. Tillich, P. (1962) The Courage to Be. London: Fontana.
117. Treichler, P.A. (1992) AIDS, HIV, and the cultural construction of reality. In G. Herdt and S. Lindenbaum (Eds), The Time of AIDS. Newbury Park: Sage, pp. 65-98.
118. Volicer, L. (1986) Need for hospice approach to treatment of patients with advanced progressive dementia. Journal of the American Geriatrics Society, 34: 655-658.
119. Volicer, I., Collard, A., Hurley, A., et al (1994) Impact of special care unit for patients with advanced Alzheimer’s disease on patients’ discomfort and costs. Journal of the American Geriatrics Society, 42: 597-603.
120. de Vries, K. (2003) Palliative care for people with dementia. In T. Adams and J. Manthorpe (Eds), Dementia Care. London: Arnold, pp. 114-135.
121. Walter, T. (1996) A new model of grief: bereavement and biography. Mortality, 1: 7-25.
122. Wary, B. (2003) Geriatrics and palliative care: the best of both worlds. European Journal of Palliative Care, 10 (Suppl.): 29-31.
123. Williams, C., Sloame, P., Zimmerman, S., Boustani, M., Preisser, J. and Reed, P. (2003) Pain in nursing home and assisted living residents with dementia: how assessment, treatment and staff perceptions relate to resident report. Paper presented at the Annual Scientific Meeting of the Gerontological Society of America, November.
124. Woods, R.T. (2001) Discovering the person with Alzheimer’s disease: cognitive, emotional and behavioural aspects. Ageing and Mental Health, 5: 7-16.
125. Woods, R.T. and Britton, P.G. (1985) Clinical Psychology with the Elderly. London: Croom Helm.
126. World Health Organization (1990) Technical Report, Series 804. Geneva: WHO.
127. World Health Organization (1996) Cancer Pain Relief (2nd edn). Geneva: WHO (www.who.int/hiv/topics/palliative/PalliativeCare).
128. Zarit, S.H., Orr, N. K. and Zarit, J.M. (1985) The Hidden Victims of Alzheimer’s Disease: Families under Stress. London: New York University Press.